Have just found this brilliant site. Will be getting together some presents and cards to send.I love knitting too, so will also knit some little cuddly toys. Much love to everyone. XXX

Sat 14th August 2010 - 02:23:16 PM

Have just found this site and am going to put a link on my facebook site. As I work in a local school i will be putting a link in our newsletter so hopefully we can get some children writing in. What a fantastic site I will be sorting some presents to send this weekend.Sending my best wishes to all the children on this site xxxxx love ginette

Fri 13th August 2010 - 09:16:56 PM

Hi Courtenay has had a good month, she saw her Paedatrician who says that everything is ok for now. Courtenay is waiting to be referred for an earing tests because we find that we have to say somethings over and over before she answers. Firstly we thought that it maybe stubborness but her teacher supressed a concern about Courtenay's hearing.

We are frustrated about the bone density tests because the paedatrician is no longer referring her for them. It's difficult because that doctor doesn't specialise in NF and wasn't taking our concerns seriously. Courtenay has had 4 breaks in 2 years, the last she woke up in bed in the morning with.
Last week I saw my own NF specialist in London and I asked about Courtenay's breaks and if there could be a link with NF. She says yes definately because in NF bones are more brittle and thinner. She is now trying to refer Courtenay to a NF paedatrician at Guy's hospital.

Courtenay has another accident the other day, she caught her finger and ripped the nail off, so she had another visit to hospital. She is very accident prone bit the clumsiness is due to NF (or so we have been told).

We are all off to Turkey for 2 weeks on 14th Aug so we are hoping for our first holiday without a hospital or doctor visit with courtenay. Our holiday insurrance is well used lol.

I am so glad that Jon Paul is showing signs of improvement. Jon Paul I think you are an inspiration to us all. xx

Tue 10th August 2010 - 01:34:11 PM

Hello. I have just sent a little something for Jaz and your sister but I wish I cud send you all something. You are absolutely amazing pepal. The world has so much to learn from you. I love seeing the smiles on your faces. I have severe M.E so I no a bit of what it is to suffer but you are all awesome and so are the pepal who run lis site. It is brilliant. Keep enjoying life as mush as you can. Every day shud be precious for us all. Lots of gentle hugs. Daniel (12)

Mon 9th August 2010 - 01:19:07 AM

Hello Jon Paul :)
Glad to hear things have improved for you a little.

Best Wishes x

Sun 8th August 2010 - 07:55:39 PM

Hi Jon Paul!
So glad to read u r through the worst. keep :-) more post is on its way :-)
Love Bethan.x

Sat 7th August 2010 - 08:01:56 PM

Hey Jon Paul,
Popping on to say Hi from sunny Lyme Regis. Hope you are enjoying these messages just for you xxx Jayne xxx

Sat 7th August 2010 - 09:07:43 AM

Hi Jon Paul! The warmest greetings from Holland the country of windmills and tulips :) Apparently the current rain in Amsterdam where I live came all the way from the United Kindgom, do you know anything about it ;)? Hugs xx Anna

Sat 7th August 2010 - 08:52:19 AM

Hi Jill here JP (MUM) Just to say that he is starting to look like his old self again still have to stay in hospital for another 2 weeks but he is making progress the doctors have said that he scared them put the fear of god up me and my husband but glad to say he has come through the worst of it . He would like to say a big thankyou to all his postpal friends who have sent him cards and gifts and to say hello to Sarah G to thank her for the fire stuff she sent him also to Bethany who has been nominated has his best friend will keep you up to date on how things go in the mean time be POSATIVE not NEGATIVE about your illness has Jon Paul likes to say.

Jill Oxley (mum)

Sat 7th August 2010 - 08:05:49 AM

Hi Jon Paul! Popped on here to say "Hi". I see you are at Harefield on 27th. Im just down the road from there & my dad was discharged from there this afternoon. Keep smililng xxx

Sat 7th August 2010 - 12:11:29 AM